Hindsight: When It’s Not Always 20/20

What did I do wrong? What could I have done differently? How could this happen?

What did I miss?

We ask these questions in the wake of local or national tragedy. We ask them when our children misbehave. We ask them when we suffer a financial loss. And we ask ourselves these questions when we hear the words:

You have multiple sclerosis.

When those words were first put onto the table during my diagnosis process, my mind spiraled into a self-blaming frenzy. Did I do this? Did I not exercise enough? Should I have taken my mother’s warnings about vitamin D deficiency more seriously?

Maybe. But it’s not that simple. MS is pretty indiscriminate and the cause is still unknown, so instead of focusing my confusion onto my perceived shortcomings, I started to look at possible red flags that my body may have been trying to show me years earlier.

I had a pretty violent introduction to MS, but if I took away those really intense attacks in the beginning that ultimately led me to pursue answers and medical help, were there other possible warnings that I had previously ignored?

I’m not a medical professional and any of the below symptoms can be indicative of other maladies, but here are a few things I experienced years before I knew their names or of their connections to multiple sclerosis:

This is a fun one. It’s a classic symptom of MS, but in the beginning, I brushed it off as a pinched nerve. I’ve had this happen for stretches of time more than once and it never gets any less jarring or unsettling when you move your head or neck a certain way and you feel a jolt of electricity shoot down your spine and through your limbs.

A few years prior to being diagnosed, I had several bouts of vertigo that lasted about a minute or two each time (once when I was driving on the freeway!), though there was one instance where the severe vertigo lasted a full 72 hours. Each time it happened, it was debilitating. Everything was spinning, even when my eyes were closed, and I had to cling to a wall like a bat in order to walk. Doctors told me these flares were probably due to either vestibular migraines or some inner ear complications caused by a sinus infection……but knowing what I know now, perhaps this was an early manifestation of MS?

This symptom is only experienced in approximately 4% of people living with MS, though people with MS are FOUR HUNDRED timesas likely to experience this type of pain than the general population…and I’m one of those lucky ones! This type of pain is “neurogenic” or “primary pain,” meaning it is a direct result of the disease process of MS. Some describe it as a painful twitching or a burning sensation in the face or jaw. For me, it’s like a blunt object being forcefully jabbed into my right ear. This only lasts for a few seconds when it does happen…but it’s, uh, very unpleasant.

This one is tricky, as I don’t believe my toes turn white (***EDIT: I just discovered the very tips of my big toes turn white!***), but I do know that when my fingers get very cold, it sometimes can feel like I’ve held them under ice water for a few minutes and then quickly ran them under hot water. Additionally, and more commonly for me, sometimes I can’t feel the very tippy-tip tips of my big toes when it’s cold out. When this happens, I try to wiggle my toes and put pressure on them as much as possible to get blood flowing. Does this work? I don’t know. It usually doesn’t last long and it doesn’t affect my gait. Just my little secret!

Cute and cuddly hugs, right? Wrong. Aside from the full on attacks I’ve had, this is probably the scariest symptom I’ve experienced, and I’ve gotten this years before being formally diagnosed with MS. Due to its unpredictability and how quickly it comes and goes, I just wrote it off as one of those weird, mysterious things our bodies sometimes do with no explanation. This symptom is nicknamed the “MS Hug” because it causes the muscles between your ribs to go into spasms and can feel like a tightening or pressure wrapping around you anywhere between your neck and your waistline, sometimes making it painful to breathe. It’s about as fun as is sounds. For me, though, it’s only ever happened on my left side in a very specific spot underneath my left breast. The first few times this happened, I truly thought I was either having a heart attack or as if my left lung was punctured. It’s very painful and quite alarming, but it only lasts for a short time and now that I know what it is, I don’t worry that I’m dying. 😉

Maybe a couple of these things were MS-related and maybe they were not. That’s the tricky thing about this disease–because it can trigger havoc in pretty much any system in your body, it’s hard to know whether to be concerned about something new or if it’s just another day in the life. None of these symptoms were happening often enough or in tandem with any others, so I never thought to get them checked out. Is there a possibility I could have caught it and sought treatment for the disease earlier? Maybe. And maybe not. Because everyone’s experience is so different, it’s very difficult to accurately pinpoint the time of onset. I can only speculate.

Have you experienced any of these symptoms before or after your diagnosis? When you’ve looked back for any possible early “signs,” what did you find?

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13 thoughts on “Hindsight: When It’s Not Always 20/20”

Susan Lesperance

Cat, thank you for going back to describe the various symptoms and their MS connection that presented themselves to you in the days before your official diagnosis. You have once again educated us…and made a big difference! You are awesome!

I was diagnosed years ago, when I was 15, in 1994. My mum told me that, when I was a child, used to complain about how I felt like I had water running down my back, but there was nothing there. I often wonder if this was one of my first ‘signs’.

Oh wow! I wouldn’t doubt if that dripping feeling was an early symptom. I recently read something by someone who says his feet always feel like they’re wet, even when they’re not. Your comment reminded me of that. Thank you so much for sharing! 🙂

I was dx at 50 – happy 50s whoop whoop! But at 40 I had vertigo attacks, increasing migraines & I started losing the hearing in my right ear. In my mid forties I suffered from the infrequent random shock pains in my hands & feet with occasional numbness in my left leg/ toes with lots of fatigue. Everything was so random that no one doctor could put it all together. Im on Copaxone now. Everyday is like a box of chocolates, you never know which one your gonna get. 😄

Your “red flags” are very revealing. I had trigeminal neuralgia for about 4 months last summer/fall. Since then, I have kept an eye out for any interesting reads on the subject. Your post connects some of the other nerve related episodes I have been experiencing over the recent years – namely the Lhermitte’s Sign and the MS Hug. Your hind site is my foresight. Thank you.

I didn’t know my first symptom was an issue at all until NARCOMS mentioned it in their survey. When I sit and put down my feet as if to tip-toe, my calf will start twitching and set my knee bouncing within seconds.

I can’t be sure when it started. I mean, there’s a time when your legs dangle from the furniture. By the time I was tall enough relative to our furniture, that happened. Was the symptom lurking before then but couldn’t manifest? I’ve no idea. But Dad bounced his knee…

After I’d discovered it could be a symptom, I asked him about that. Yes, he bounced his knee. But he could control it. And my family never knew I couldn’t stop bouncing my knee while otherwise maintaining my position. Wow.

Blew me away. Before I knew this was an issue, I could track my symptoms back to age 15 or so. This revelation put my first (retrospectively) identifiable symptom back to age 11 or even 9. Wow. And we all missed that it was a thing until nearly ten years post-diagnosis until such a symptom was specifically mentioned. I wonder how many other MSers were in the same place.

Sure thing. Weird not to have known, right? But lists of symptoms generally only include bad things, not merely odd things. Makes me wonder what other phenomena MSers may experience that are inconsequential but for indicating neurological issues. Could be important.
Geez, I want there to be a study on this one. How many MSers do this or something similar (yet to be described)? How many other people with neurological disease? How many without? It’s important because there could be an extremely simple screening test based on this symptom that might lead to a neurological work-up before the person knows anything is wrong. How small a percentage would it have to catch to be worth it? I dunno, but finding out how many there are would surely be a good start.

Recently diagnosed. I didn’t realize about the Hug, was having that 5 years ago and also Lhermette’s Sign (sp). As I look back, it seems like it has been happening for a while. Its been a crazy 2 years trying to figure out what the hell is going on with me.